Reduced capacity: my year writing with a chronic illness

A chronic illness is a life-changing experience for anyone – but what if it stops you from doing the one thing you’re best at? Dick Widdison writes about his year writing with a chronic illness.

I’ve never found writing hard. It’s the brag that I genuinely never intend as one – it’s just that the act of turning my thoughts into words and those words into sentences has never been a difficult one for me. It’s as easy as thinking, as easy as breathing, as easy as living.

This year is the first time I’ve found writing hard.

*

Last year I got a referral letter intended for a specialist on Friday 22nd December at 2:57PM. Like most people at that time, I was wrapping up my final day of work, and waiting for work drinks to start at 4PM. In all honesty, I think most of us had started those particular work drinks early.

The referral wasn’t even intended for me – I was copied into an email sent to another specialist. It was a no-nonsense email:

“Please could you see [redacted]. It is likely that he has [different redacted] based on his test results. I would appreciate your future management of [first redacted] in this matter.”

I thought it was strange to be copied in on that email – and would later find out that, yes, it was strange – but I googled [different redacted] and got a whole range of scary results.

The different redacted was a life-changing illness, a chronic one, not quite the Big C, but a medium C. One that’s not named after Hodgkin, but still has to do with the blood.

I went on a deep dive for the next hour, quietly trying not to freak out while everybody around me was still working or pretending to work.

It would be a month until I would be able to see the specialist I was referred to, because guess when nobody – including private health specialists – works over the Christmas and New Year break.

January wasn’t the best for me, to put it mildly.

*

Writing comes from clarity, and writing produces clarity.

Whenever somebody asks me for advice on writing, which they do less often than I’d like, I tell them just to get a first draft done. Firstly, at least you’ve got a finished product of some kind. It might be bad, it might be the worst thing you’ve ever written, and it might be the worst thing a human being has ever written. But from there you can improve on it, and make it not the worst thing.

Secondly, once you’ve got a first draft done, then you have something that you can begin to mould. You can fix the sentences, clean up the intent and make everything clean.

If I’m honest, I never feel confident in what I’m thinking until I’ve got it written down. As beautiful and musical as human speech can be, it’s also distressingly unclear, as any robotic transcription service will tell you. It’s full of unnecessary interruptions and muddy contradictions. Once written down, language becomes like a music sheet – you can properly interpret it and make meaning of it.

Writing is how I make meaning of things, and in a fairly directly way, make meaning of myself.

*

On the 22nd of January, I had a plan in place. I would see the specialist, then I would hang out with my two best friends. It would be a celebration or a freak out. Either way, alcohol would be provided and everything would be fine. Regardless of the results, I would not die that day.

The results were… not the best.

I was not going to be dying anytime soon, but I would be living with something that would be a constant annoyance, even a constant pain, for the rest of my life. Treatment would mitigate it, not cure it. I was an atypical case with atypical symptoms – and it’s only then that I learned that atypical was an unkind synonym for ‘special’. When I mentioned my Googling, my specialist told me off and said that the worst case scenario that had inevitably turned up on Google was “not the reality we’re living in”.

At any rate, I had a medium C.

I walked home, I dutifully messaged my best friends and they came over together. I told them what was going on, I confirmed some things we knew to be true and others we’d hoped were not, and everything seemed to be fine. I was holding it together, if holding it together meant not crying a whole lot.

Then one of them, in his sweetness and need to fill a silence, said that he’d been stressed out about it as well.

After a month of sleepless nights – which I realised weren’t entirely emotionally led but also sickness led – and strained thoughts, I finally burst into beautiful, stressed, medium C tears. Hugs were had, comforting was done, but the tears had started the next phase: acknowledging I was sick.

I started to put the next plan into place; I would make sure people at my work knew, knew that my capacity would potentially be reduced, and knew that I would be still going on my planned work trip the following day.

Because, as though time and calendars hadn’t screwed with my processing of this enough, I had a flight to England the day after I found out I was sick.

*

Some of my ease with writing comes from a teenagehood spent in nerdy chatrooms about [absolutely fucking redacted] and [yup, redacted]. They’re simultaneously more nerdy than you’re thinking and far less salacious.

Namely, the ease comes from the need to produce language – clear, tonally consistent language – at the rate of human conversation. Not only does it make you incredibly quick on your fingers, it makes the rate at which you write easily understood language much faster.

After some practice, typing becomes as easy as talking but without all the verbal clutter that makes talking imprecise and insufficient for communication.

The further and further we get away from the physical limitations of writing, from the days where you had to fuck around with a pot of ink, the easier it’ll get for all of us.

Until that stage, it’s easy for me, and I’m grateful for that limited self-appointed superiority.

*

I don’t know for sure the best place to figure out your life after finding out you have a debilitating, incurable – though somewhat treatable – disease is, but I know for sure know where it’s not.

It’s not on a sixteen hour flight to Dubai.

It’s not on an eight hour flight to Birmingham.

It’s not on a press junket that is an hour away from your hotel.

It’s not on an hour long trip back to your hotel with three people you’ve never met before, three people who seem uninterested in letting the natural silence that emerges between strangers sit for even a single moment.

It’s not in an ‘authentic’ Argentinian steakhouse in the middle of Birmingham.

It’s not in London, in a winter that is much colder than the Wellington winter you’d packed for.

It’s not at your sister-in-law’s place in Westminster, which she has graciously emptied for you.

It’s not in the king size bed that you spend restless nights in, because your broken body refuses to adjust away from New Zealand sleeping patterns, reminding you that even if you take two planes and a train to the other side of the world, the news you received isn’t going away anytime soon.

If there’s any grace to being on the other side of the world, away from the closest people in your life, it’s the grace of having to adjust your mind immediately to what your condition is, and what your future might look like without the added noise of other people’s thoughts, emotions and fears for you.

Also, the alcohol is far cheaper over there, and they sell it at the corner shop.

*

Writing isn’t just the process of putting words into order on paper, virtual or literal. It’s a very physical act – it gets words out of your head, it builds sentences, it builds philosophies. It’s a way of collecting the detritus of your mind and constructing them into something that has value to yourself and other people.

Writing is many things to me. It’s a form of expression, like I’m doing now. It can be an act of service. God knows how many times I’ve written people’s cover letters or resumes in a fraction of the time that they could write them.

Most importantly, it can be a form of self-creation – when you make a living as a writer, your words are the blocks that you use to build yourself, and your sense of self. You spend a lot of time with your words, and they become as important to you as your limbs do.

Writing takes on many roles in my life. Writing is my weapon, it’s my armour, it’s whatever other cliche you can think of. It’s very important to me, and how I define myself.

When all other things are gone from my life, I know that I can pick up a pen or open up a laptop, and when I type, something will come out and it will make sense.

*

Another good thing about being on the other side of the world is that it lets you rehearse the conversation you’ll have for the next few weeks, months and possibly years. The reveal conversation, the one that inevitably shifts any future relationship one way or the other, the one that disarms them and completely exposes you.

You can’t lead with the medium C, because it puts the other person’s brain into fifth gear immediately and then the car stalls.

And you definitely can’t lead with “I need you to know, I’m okay” because that’s the sickness equivalent of “We need to talk”, which is the cruelest preface to a conversation that the English language affords us.

I learned the order in which to impart information: lead with how long you’ve got left, how you’re fine, how it’s treatable, how you’re not going anywhere. I learned that the reason to do this wasn’t just to pre-empt emotional reactions, but to cut off conversational branches.

When I got back home, I would have dozens of these conversations. The labour of deciding who should know what and who needs to know is like the most sadistic Christmas card list. Eventually, it lands on the mercenary, “What will this person do with this knowledge?” There’s no point to knowledge if you don’t act upon it, and after figuring this out, it became clear who should know, and who shouldn’t know.

I remember, after one particularly draining conversation where I ended up shouldering one person’s emotional labour rather than releasing some of my own onto them, rolling my eyes and lamenting to a mutual friend, “Telling people is worse than the actual thing.”

Hindsight is not only 20/20, it has a sniper rifle with a laser-sight, and it’s coming for the headshot.

*

It was easy to deny that I was sick when it wasn’t having any concrete effect on my life, or at least concrete in the way I defined it. Sure, I might be getting less sleep. Sure, I might be waking up and feeling like a truck hit me. Sure, I would start sweating seemingly at random and have to shut my eyes and think of happier times. But that’s not concrete.

Concrete is when I sit down to start writing a sentence and nothing comes out. The words don’t link up. Sentences don’t form paragraphs, paragraphs don’t form pages, pages don’t form a finished piece of writing, a finished thought, a proper sign that I’ve achieved something that day.

All the cliches about writer’s block hit me at once. The tyranny of the blank page, the procrastination, the doing anything to get away from the fact that the one thing that had always been easy for me, for as long as I’ve been able to form memories and form sentences, suddenly became hard for me.

I finally had to say it. “I’m sick.”

My doctor had said it. I’d said it to other people. I hadn’t actually said it to myself. But now I finally had to. I was sick, and I wasn’t ever going to get less sick.

*

Telling people was, of course, not worse than the actual thing.

The actual thing was, and remains, bad. Imagine what it’s like to be hungover – the lack of energy, the dehydration, the feeling of being full while being hungry, and the general lack of motivation. It’s terrible, right? Now imagine that, but you haven’t done anything to earn it, and it doesn’t wear off as the day wears on.

When treatment eventually started it doubled, tripled, or quadrupled that sensation, depending on how dramatic I was feeling that day. It was like I’d drunk a bottle of spirits the night before, without the regret of doing so, and any of the fun you could possibly have from drinking a bottle of spirits.

But the main thing is: I can do less. Or to flip it, I can’t do more.

For more months than was good for me I tried to pretend I was the same person that I was before I got sick. I continued to go out a lot, I continued to work and overwork a lot, I continued to read as much as I wanted, and I continued to write like a machine. From the outside, if you didn’t know I was sick, you wouldn’t have guessed.

I curse an inability to admit weakness and vulnerability, and thank a dedicated and intensive skincare routine, for why I was able to hide it for so long.

*

The reason why we hate hearing ourselves talk is that we don’t hear our voice as it actually sounds. We hear the voice from inside our own head rather than with our earholes. (That’s probably not scientifically true, but it’s true enough for the image.)

When I properly admitted to myself that I was sick, reading back my own writing was like hearing myself speak on tape. To everybody around me, my loved ones and my friends, who read my writing, they could not see any difference. They knew I was sick – they were there to observe the absences, they dropped off meals, they hung out with me to make sure I wasn’t entirely despairing – but the difference in my writing couldn’t be seen.

I wrote [redacted acclaimed thing], and even though I wrote that thing a few years ago, when I wasn’t sick – there was no reason to believe I wrote it when I was well. I wrote [several very good redacted things, take my word for it] and people responded. To them, there was no difference between my writing when I was well and my writing when I was sick, if they even knew I was sick at all.

But to me, I felt every clunky sentence like a personal failing. I treated every typo like I’d blasphemed. I treated every jump in logic or gap in the argument like I had personally offended some writing overlord. I self-flagellated like an apocryphal monk in a Dan Brown rip-off.

I read my own words and I didn’t feel like I wrote them. Someone who was trying very hard to be me had written them, and while they might have had all the notes right they didn’t quite have the range.

Not only had being sick made me be able to do less writing, it had prevented me from doing good writing. It had robbed me of not only the thing that came easiest to me, but the thing that allowed me to define myself. Without it, I felt myself become hazy. I felt myself become murky.

I felt myself become worse.

*

A few months ago, I found out that I was no longer viable for treatment. It’s not a permanent thing, it’s a check back every few months and see if I’m viable again kind of a thing. It’s about as frustrating as it sounds, but I’ve made some amount of peace with it. It’s more of the peace you make with racist relatives at Christmas, it’s not a happy peace, but it’ll be resolved sooner or later when one of you die.

To combat the illness and lack of treatment, pills have been added, taken away, multiplied, or divided to manage the increasingly falling apart organism that is my body. The pills are just as bad as the treatment – it just takes the double hangover and spreads it out over the month.

I can’t think of a day, before I got sick, where I didn’t write something. Whether it was a snatch of text that just came to me out of nowhere, or a full piece of writing, or even a couple of jokes here and there. When I got sick, the days where I didn’t write outnumbered the days where I did. Even worse, the days where I wrote something I felt genuinely proud of were few and far between.

I can handle just about anything life throws at me, and I have. Break-ups, easy. Deaths, shitty but the rest of us move on. Loss of work, there’s always something around the corner. Even being sick, sure, whatever, Western medicine is beautiful.

But not being able to write? That wasn’t something I could handle.

*

It’s a year to the day since I found out that I might have something.

In the time since then, I’ve scaled back my time at work. I go out a bit less. I read a bit less. Everything’s just a little bit less. There’s no way to make myself better, but if I can handbrake getting worse, then I’ll do what I can.

There’s nothing inherently profound that comes to you when you find out that you’re sick. Your brain goes into overdrive trying to get from day to day, and making meaning of anything is low on either your conscious or unconscious list. It’s all in how you respond to it, and how you take the experiences.

There have been days during this thing where I’ve felt, in a concrete, tangible way, like less of a person than I was a year ago. Where I feel like some of not only my body, but my brain, and whatever mystical thing that writing comes from, has been eroded away by being sick.

But there have also been days where I wake up and I feel an eerie amount of clarity. I don’t wake up sweaty, I don’t wake up feeling like I haven’t slept a second, and I don’t wake up knowing that the day is going to be the next one in an uphill battle, Prometheus against the raven eating away at his body.

I wake up, and I’m ready to face the day. My head is clear, my body is unimpeded, and it feels like I’m floating through time and space. I can lie to myself for a couple of hours and find clarity in that lie.

It’s from that kind of clarity, the clarity that I took for granted, the clarity that felt like a birthright, that comes words.

I pick up a pen, I open the laptop, I unlock my phone. And writing comes.

I get a little less hazy. I get a bit more defined.

I become more me.

The Bulletin is The Spinoff’s acclaimed, free daily curated digest of all the most important stories from around New Zealand delivered directly to your inbox each morning.

The Spinoff is subject to NZ Press Council procedures. A complaint must first be directed in writing, within one month of publication, to info@thespinoff.co.nz. If not satisfied with the response, the complaint may be referred to the online complaint form at www.presscouncil.org.nz along with a link to the relevant story and all correspondence with the publication.